The Lyndonville Journal:

Tough Love: Helping An Adolescent Misdiagnosed with CFS

David S. Bell, MD, FAAP

Published in Lyndonville News, May 2001

The essence of the controversy concerning CFS is the lay question, "Is it real?" It is a lay question only, as the medical question revolves around the role of emotions in etiology. But the translation of the etiologic debate comes down to the perception that if the etiology of CFS is psychiatric, it is somehow not "real."

But it goes further than that. Psychiatric disease is devastating, and recognized as such. While patients with psychiatric disease may experience shame, it is clearly recognized as being real. CFS is perceived to be somehow "lower" than psychiatric disease. It is perceived to be not real, a fabrication, imaginary, a game played by twisted individuals for some kind of sick attention. In medical jargon, it is malingering. It means that the symptoms, the so called "chronic fatigue" is a hoax; it is not real.

For patients with CFS, this perception is the cruelest of punishments on top of a debilitating, painful illness. It causes isolation, depression, inadequate medical care, social discrimination, and in some cases, despair that ends in suicide. For children, it leads to social isolation and educational handicaps that may be lifelong.

For years, I have wondered why this false perception exists. Seeing healthy children develop the symptoms of CFS and evolve into disability, there is no question about its nature to me. Sure, the cause is unknown, but so is the cause of MS, rheumatoid arthritis and hundreds of other illnesses. There are no diagnostic lab tests, but neither are there tests to show migraine, irritable bowel syndrome, and other illnesses. So why the controversy in CFS?

For years I have talked of the unpardonable discrimination against children and adolescents with CFS who are denied basic medical and educational services. I think I have demonstrated that "I believe in it. "But a few months ago I saw a youth who did not have CFS, a boy who really was using the name of the illness to cover for not wanting to go to school. It actually happens. I want to describe this situation so that the differences between it and CFS are set forth. These conditions are so different that there should be no confusion between them. There should be no discrimination in either case, but the treatment is entirely different. In CFS, treatment revolves around tailoring education and socialization to the activity limitations of the adolescent. In the other, "tough love" is the treatment. But applying tough love to CFS can be disastrous.

John had missed a lot of school in the past three months. He had headaches, stomach pain and was depressed. He was tired, and slept until noon every day. In the evening he would improve, and stay up until 3 am playing computer games and watching TV. Calculating the number of hours spent "up and around," he had nearly ten hours of activity, yet was not in school.

Being very generous, maybe John had a mild form of CFS, it is really not possible to say. If he had CFS, it was too mild to diagnose. And getting to know him, it was inappropriate to diagnose him with CFS. The central issue is the amount of activity permitted by the condition. For John, his activity level was just about normal. Ten hours of being up and around doing things is a little less than most adolescents, but not much. Someday we will have a specific diagnostic test for the illness, but even if we were to know that John had a very mild form of CFS, the treatment would be the same. John had to get it together, bite the bullet, and go to school. If he could spend three hours at a time playing computer games, he could spend one hour sitting at a desk in school.

Rather than blaming an illness for the problems, John needed the basic discipline that all adolescents need. His family was a wreck, poor communication, and erratic behavior control. It reminded me of the sentence in Ferris Bueller's Day Off, "If I lived in his house, I'd pray for a disease, too." His life was miserable. "He's the only kid I know who feels better when he's sick." But John needed treatment, the goal of which was the same as in CFS: get him to school, stabilize his life, reduce his headaches and stomach aches.

The first step in treatment was to establish priorities for available activity. Because he had up to ten hours a day, he could spend at least half of it in school. It took a number of visits, but eventually it made sense to him. My advice was simple, "suck it up," and "get your self to school." This confrontation was done with support, advice like that can never be given without support. Headaches were treated, discussions were held with school personnel. Things were looking up.

The sleep phase reversal was more difficult. Fatigue is increased in healthy persons when sleep time is excessive. John needed to become an athlete. Not one who played in sports, but one who employed the techniques of an athlete: discipline and work ethic. He began slowly, cutting back the time he got up by fifteen minutes every three days until he got up at nine in the morning. He learned to ignore the difficulties of when he would stay up late in the evening, and eventually he would get to sleep earlier. John became a non- sports athlete. He focused on tasks, applied discipline. He developed some pride in his progress, which fed upon itself, and he did well.

Situations like John's are relatively rare. In fifteen years, maybe a handful, hardly enough to justify the perception that an adolescent can lick this thing if they only wanted too. But it is every adolescent's nightmare. Even those most ill frequently have the nagging feeling that if only they could pull themselves together they could beat CFS. How to tell the difference?

First, the difference is common sense. It is the perspective gained from being able to assess the degree of overall activity and making the most out of the hours of activity possible. For an adolescent with one or two hours of being up a day, school is obviously impossible. Secondly, it is in fact the very evidence that has been gained from the trying that helps confirm the diagnosis of adolescent CFS. While pushing oneself too hard for too long is not advisable, all adolescents with CFS should try to push their activity from time to time.

Being sick with CFS requires becoming an athlete. It requires the ability to focus on what's important like discipline in treating the sleep phase reversal. One needs to develop a work ethic to get homework done and keep good marks at grade level within the limits of the severity of their illness, while fighting self-pity. And with this the adolescent should develop the self-confidence in knowing that he is doing everything possible.

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